More Narcolepsy Thoughts

it's a meandering journey...

Have I given myself permission to slow down and take a break, or is it an excuse to lay around and do nothing? Honestly, it feels like the second, but it's really the first. My perfectionist, type A side has a really hard time stopping (or even slowing down) and relaxing, and I only tend to do so when I'm too exhausted to do anything else.

So I'm working on not pushing that hard, even if it goes against the grain. Years ago, I realized that if I kept moving, kept doing stuff, I could work past whatever exhaustion or pain I was dealing with. But as soon as I stopped and sat for a minute, it would all hit me like a ton of bricks, and it would be so difficult to get up and get going again. Trying to change that deeply ingrained habit isn't easy.

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While doing some research into narcolepsy, I came across some lovely side effects. Weight gain (really? I've already got PCOS working against me in that arena, I need something else as well??) and short temper and irritability (constantly being tired will do that to you). Lovely.

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I am very blessed to have a mild case, but it's still hard to deal with, and I know that it can (and most likely will) get worse as I get older.  I'm also very blessed to have doctors who have listened to me. This time around. Twenty years ago was a completely different story on so many levels- it was the classic "we don't know what's wrong with you, so it's all in your head" from multiple doctors in different states. So frustrating.

The nurse practitioner who saw me at our doctor's office took the time on a couple occasions to hash out what was going on, for how long, what I was/wasn't doing different, etc. She did the two rounds of blood work, and took the time to research possible diseases to test for in the second round (among others, they looked for mono and lyme). When she still couldn't find anything that would explain my symptoms, other than possible sleep apnea, she referred me to a sleep specialist for more testing.

I'm seeing the nurse practitioner in the sleep specialist's office, but both she and the doctor are quite knowledgeable. The doc has quite the list of credentials and has done a lot of research and consulting about sleep and athletics for sports teams. He's the one who set up the sleep study clinic that I went to for my testing about 15 years ago.

So far, I don't feel like meds are being pushed on me, though it has definitely been presented as an option, and I brought home a big packet of info on the super heavy duty sleep meds, so I could read through it. The NP mentioned trying the keto diet and finding support groups as ways to cope with the disease. So many people on the narcolepsy groups are having the exact opposite experiences from what I've had this time around. So getting diagnosed while we live here, where a knowledgeable specialist can help me, is such a blessing. Right time, right place.

Breaking my foot has also been serendipitous in this case. The fatigue got a lot worse a couple weeks before my half marathon, but I pushed through and finished my training and the race. Breaking my foot right afterwards forced me to sit and and rest, and showed the doc that the half marathon training wasn't the cause of the constant exhaustion, since I was still always tired, even while just sitting on my bum all day.

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It's nice to know why it's so hard to get stuff done sometimes- I'm too tired and fighting the sleep. Since I've spent years fighting naps, I have a hard time taking them, but I do end up zoning out and not being productive. I've been working on taking naps, but it's hard to allow myself to do so when the boys are running around making noise. It's a process. The times I've managed it, I've been a bit more functional later in the afternoon.

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Looking back, I think my symptoms started getting worse after the boys were born. I was chalking up my inability to get as much done to being tired from chasing after the boys while no longer being a spring chicken, but I don't think that's really the case.

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Autoimmune diseases really suck. The more I learn about them, the more I realize just how badly they can impact your quality of life. And they're "invisible disabilities", so they are frequently minimized or brushed off as not a big deal or all in your head. But they can mean pain, fatigue, an inability to work or to even function. Divorce and depression are not uncommon side effects, as is poverty. That's the one that I keep seeing in the narcolepsy groups- depression and poverty, which go hand in hand. Depressed because you can't work, poverty because you're stuck relying on government handouts because you can't work. Frequent doctor visits. Medication refills. Insurance denials. Paperwork out the wazoo. Meds that don't work or cause unpleasant side effects.

And this is why I keep working to be as functional as possible.